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Thanks to Rebecca for such a heartfelt letter. Read it and leave your thoughts in the comments section at the bottom of the page.
Date: June 13, 2013, 5:10:28 PM EDT
To: "email@example.com" <firstname.lastname@example.org>
Subject: Listener Email from www.700wlw.com
Honestly, this morning was the first time I have ever listened to your show. My husband listens daily, and he text to say, "Hey Babe, turn the radio on 700 AM. The topic is about autism. I am on hold to comment." So I turned it on. I tuned in to hear Jennifer.
Before I comment on Jennifer, here's a little background. I am mommy to Liam, a five year old, little boy. He has blue eyes, blonde hair, and is completely adorable. Looking at my son, you would not know he has a disability. This is true for many children on the spectrum. However, Liam has moderate functioning autism, expressive receptive language disorder, and encephalopathy. Liam is also a 90 pound, almost 4 foot tall, five year old. He's a really big kiddo. He is not overweight because of his diet. Aside from autism, Liam has hypothyroidism. He was 8 pounds 12 ounces at birth, 22 pounds at 6 weeks, 45 pounds by 1. He was breastfed most of this time. He has metabolic issues that prevent him from processing calories correctly. People see him, and assume he eats junk food all day. He is on a gluten free/casein free/soy free/ Specific Carbohydrate Diet. He can't have sugar, fast food, processed foods. He eats better than most children.
Originally, I was on hold to tell you about our King's Island adventure two years ago. We were participating in the JDRF walk for the cure. We have another son who has juvenile diabetes, and wears an insulin pump. Liam was newly diagnosed--just a couple of weeks. I was in overdrive learning about autism, implementing his new diet, processing everything that was happening to our family. Truly, I was heartbroken. My beautiful baby, my son-- I felt like he had been stolen from me. There's no other way to say it, but I was devastated. Anyway, in my head I assumed, we will go, we'll wait like everyone else, someone will get sunburned, someone may get a scrape, we'll play hard, the kids will fall asleep on the way home, and wake up tomorrow begging to go back. Boy,...
A day at King's Island for a special needs family,...
Traveling with our children is never easy. Dietary restrictions limit
eating away from home, which means we have to pack every snack and meal before we leave the house. We have diaper bags, diabetes kits with emergency supplies, extra changes of clothes just in case, medicines, our go to tricks to get the medicines down, special needs stroller, and all the other typical family stuff. We look like we're going on a camp out everywhere we go. A few years into it, it doesn't bother me. It has become our normal, but back then, it was all new. Honestly, I was self-conscious. When you are put into difficult situations, you're forced to evaluate yourself. What matters? What doesn't? How shallow are you? What needs to change within yourself to make a situation work? So back to our day, we participate in the walk, and enter the park. We make our way to the little kids part, and immediately my little guy's interest is sparked when he spots the train. Of course, the older two kids had their own plans, and the train was not part of it. So my husband took the older two, and Liam and I stayed behind to chug along. Are line passes important for special needs families? You can decide. Luckily, there was no line when we stepped up to board the kiddy train. He loved the train. He completely relaxed, and enjoyed the trees and scenery. I used to be able to tell you, exactly to the second, how long that train ride was, that info has left me, but it was around two minutes. We rode the train 38 times. Every two minutes, my son would have a complete meltdown. He would scream and cry. He would fight me and the worker. In a hundred degree weather, I'm wrestling a 55 pound, three year old (at that time) every two minutes, 38 times in a row. Well,...it wasn't exactly every two minutes. A line had begun to form. So after every ride, we would go to the end of the line, where my son would scream to the top of his lungs, gouge my eyes, pull my hair out in patches, scratch my face until we were back on the train. Is he a horrible, mean tyrant? No. No, he's not. Expressive receptive language disorder means a person does not understand what your are saying, and they can not verbally communicate their needs. When your only means to communicate anger and frustration is through action, how do you do it? Remember, you are three. I will tell you how, you beat the crap out of something or someone until they release you. The whispers and stares were so crushing. Remember, a few weeks prior to this, my son only had a speech delay, and in my mind, I was very much like the parents who were staring at me. After what felt like an emotional eternity for me, I can only imagine how confused and upset my kiddo was, Liam spotted a mini, race car ride. On the train, I had been able to ride with him. On this ride, I could not. I tried to explain to the operator, my son has autism, and he may have to stop the ride if Liam could not tolerate it. It's not like a typical, scared child, who is able to calm, self-sooth, and move on fairly quickly. Three or four minutes of over-stimulation may take hours and hours for my son to get over. On top of that, he would be so traumatized, he would never attempt another ride like that again, ever. Example, a lap dog snapped at him when he was 18 months old. He has an alarming anxiety and fear of dogs to this day. As the ride started, I could tell he was going to lose it. Sure enough, he started wailing, reaching for me, and trying to find an escape. I quickly asked the operator to stop the ride. He told me he couldn't, and crying wouldn't hurt Liam. Well, obviously this person knew nothing about mama bears and their cubs. He probably still remembers me-- the mom who ripped him a new asshole, and climbed over the railing to get my kid. Needless to say, he stopped the ride. My child was shaking uncontrollably. After quite awhile of hugs and deep pressure, he saw a water maze. He loves water. So, off we go. This water maze, my word, what to say? He's autistic, every bead of water was amazing. Of course he's not going to run strait through like a typical child. He was fascinated. So he's running back and forth, going in the exit, he won't go all the way through. I'm chasing him back and forth, trying to get him because this operator, another gem, is continually telling me my child is breaking the rules. Apparently, standing inside the maze, up against a mesh wall, watching water spray (no one else in the maze) is a big rule breaker. (Laughing) So I wrestle Liam into my arms, and get my butt whipped again, while getting drenched to my underwear. By this point, I was ready to have a meltdown of my own. Was it always going to be this way? Would we never be able to do "normal" stuff? The day was really a blur. I think I cried the whole way home. The kids slept, but that was the one and only time we have been to King's Island. Fast forward to present day, and I think it is absolutely something we would try again, but we can't afford it. Liam has come so far, developmentally, due to great therapist and biomedical interventions. However, those treatments cost thousands of dollars, and leave little money for things like passes to King's Island or family vacations. Don't feel sorry for us (smiling), my non verbal son is now verbal, just one of the many gains he has made. So to this mornings topic, King's Island should simply require medical documentation to purchase a pass to skip line. Kids who have this pass shouldn't have to come back in an hour. They should be able to ride, and move on. Should we teach our kids patience? If possible, of course we should! Trust me, turn-taking, patience, waiting, manners are all on our skills agenda. It's not just lines that they have trouble with, it is every need or want. My son does not relent until he gets what he wants or needs--or I come up with a damn good substitute. We work on these skills in various therapies. King's Island is not the place to teach these skills to autistic children.
Now to Jennifer...
As I listened to you talk, I was giving you a lot of understanding, patience, and compassion. After all, it was clear you were ignorant to the world of autism. Most people are unless it effects their life in some way. Mother to mother, if you weren't able to communicate verbally with your children, how would you feel? Some parents never know what their child is feeling, thinking, when they're hurt, in pain, sad, happy. The simple act of giving a hug is too much for their children. We don't sleep because our children only need an hour or two. When we do sleep, there's an overwhelming sense of anxiety and fear. Example, this morning, in my sleep, my mother's intuition started talking. Wake up! Get up! I woke up to see my front door wide open, and my five year old was gone. You can't imagine the fear, desperation, helplessness that overwhelms you. Ever lost one of your kiddos in the store for a minute? Remember how upset you were? Imagine if that child couldn't speak, yell for help, or recognize danger. But, the same child can figure out how to unlock every lock you put on your doors, no matter how high up you install the locks. Luckily, my son is gifted with an amazing memory, and as I was running around, barefoot in my pajamas, he came climbing up the very short, hiking trail behind our house. This morning could have ended a lot differently. Autistic children die all the time from wandering. Needless to say, we're adding yet another lock. How excited were you when your children potty trained? Yay! No more diapers, right? Wrong. My son is in diapers at five. I have changed more diapers than a typical mom could even imagine.
Imagine restraining your child every single time you took him to an appointment where he had to be examined. Imagine hearing him scream, "Mommy help me! I'm a good boy! Somebody do something." As hard as you try, you can't help him understand why this is happening. While you're trying to explain to your kids why special needs kids get to pass them in line, I'm trying to teach my son to point, look in my eyes, say mommy. Thank God we've moved passed this, but we used to have to restrain my son twice a day to brush his teeth. At one point, every transition was a meltdown or tantrum. Do you know what a transition is? It's moving from one activity to the next. Do you know how many times per day people change activities? That's how many meltdowns my son used to experience. Autistic children's ability to process their senses and understand the world around them is often very limited. A mother's touch could feel like fire, the buzzing of a dishwasher may send them over the edge because it hurts their ears, large crowds can cause anxiety. Smelling your perfume could give my son an instant headache, and make him barf on the back of your legs while we're standing in line behind you.
You should count your blessings that your children are healthy, that going to an amusement park is something your family enjoys so much, you buy season passes. You should consider the parents watching their children die, or the parents who worry that they have to live forever so they can take care of their children. Who else is going to show them love and compassion? Certainly not a person like you. Google compassion and thankfulness, you may benefit from a crash course.
As the mother of an autistic child and a special education teacher, as I listened to you talk, I was reminded how important autism awareness is for the general public. I didn't really judge you, up to the point you called my son and his peers retarded. He is not retarded. In fact, he is gifted. At that point, the mama bear came out in me, and honestly I willed horrible things to happen to you. Mainly, because you became a pest control problem at that point. Set a trap, let her chew off her own leg, maybe she will hit a main. But, it quickly dawned on me, your attitude toward others will seal your own fate. There was no reason to wish bad things on you.
I feel so grateful, thankful, and blessed that my beautiful, amazing, smart, often challenging, little man was given to me, and not one of the Jennifers of the world.
P.S. In the event our family does make it to King's Island this year, I hope we see you there. I will be the one with the "obese retard" passing you and your children in line, waving. ;-)
To the host my husband calls "Sloanie," (I'm guessing this is an affectionate mannism, laughing), thank you. Thank you for covering this topic, for going to bat for these kids, and for reading this rant.
You are awesome,